Friday, September 18, 2009

Free flowing tears...

I cried twice yesterday. In both cases, I was talking with friends, and my tears came in response to stories they were relating to me. Neither instance was a bawl-your-eyes-out kind of thing, but the tears were definitely there, and I had to take a few seconds to compose myself before continuing on in my conversations.

The first bout of tears came because a friend of mine told me that a friend of hers is being tested for an assortment of auto-immune diseases, and after almost 6 weeks of being sick, a trip to the ER, a 3-day stay in the hospital, a doctor or two had the gall to tell her that her symptoms might be all in her head.

Raise your hand if you've ever heard that one before.

Doesn't that just infuriate you? I mean, there you are, sick as a dog, desperately seeking help from the people who are best equipped to give you answers, and they come back with the old "maybe it's mental" thing. Come on, doc! Is it just a kind of a default when you can't pinpoint a medical explanation for what's going on?

I can tell that in the almost nine years that I've had lupus, my beloved Dr. R (my rheumatologist) has never, and I mean NEVER, suggested that a symptom I've brought to the table was "all in my head." And it's not as if the manifestations of my disease haven't stumped him. There have been numerous times when my reports of swellings, infections, pain, or discomfort couldn't be explained - and yet he never stopped trying to uncover the source of the issue. He'd phone another doctor during an appointment, refer me to another specialist, or do a little research on his own to try and come up with a remedy. And with every effort he made, I felt that much better about the care and treatment I was getting. I wasn't alone - he was right there with me - and in some small way, knowing that someone believed me was enough to give me hope.

Truth is, I'm not sure what I would have done if he'd told me my struggles were all mental. I think I might have cried...just like I did today when my friend was relating the story to me. It's just a crummy, crummy deal - and absolutely inexcusable in my book. Feel free, of course, to shoot me an email or write a comment if you've ever been treated this way. I'd love to let my friend know that she and her friend aren't alone!

My second bout of tears came when a friend was telling me about a car accident her son had been in this past spring. She'd gotten the call in the middle of the night, and rushed over to the hospital the moment she'd heard. She met him there, in the trauma unit...and was overwhelmed with emotion when she saw him laying in bed, bones broken, cuts everywhere. He almost didn't make it - and now that I'm a mom, I realize that there's nothing I want more than to save my sweet little Deerdeepants from ever experiencing pain like that.

I know, I know - overprotecting your kids isn't a good thing...but I'm just talking about never wanting to see my baby doll suffering so.

Come to think of it, I'm sure my mom didn't want to ever see me in such pain and agony as a result of lupus, either.

4 comments:

I was diagnosed with lupus in Sept. of '08 when I was 20 and I had been told it was all in my head since I have my first hopital stay when I was 14. It was maddening. I definitely understand the frustration. It is one of the most disheartening things to not be believed. I still am not believed a lot because I do not look sick and because I had been given so many diagnoses that had been disproven that people are waiting for this one to be also. This one has stuck around for a year and I have pretty characteristic symptoms and blood tests. So its nor going anywhere. I just wish people would stop treating me like its STILL all in my head.

Thanks so much for commenting - sounds like you know EXACTLY what the girl from my post is going through! I'll pass on your empathetic thoughts - and best wishes as you continue to fight lupus. Know that you're not alone!!

Hi! I am really excited about your book! I just wanted to trow out there this newsletter I get from Women to Women every two weeks or so. The last one was on lupus and menopause -- how symptoms of each share a common cause -- and how similar they can be -- including mood swings. It's worth a read -- and no, it's not all in her head!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.